18 October 2014

Agony of 13-year-old Nigerian fighting brain cancer in US hospitals

He walked slowly and weakly into the living room and then slumped on the sofa. His face expressed frustrations at pains from the day’s headaches.
“I am sad because I have brain tumour and it’s giving me different problems like headaches, weak arms and legs. I’m very weak and have difficulty in walking. It also affects my vision but God has a way for me. I enjoyed outdoor games but I can’t do them anymore and I can no longer play with my friends outside. I don’t get to go to school because of this illness. I’m in eighth grade, but I’m home schooling these days,” he said, as he covered his body with a blanket,
He was stretched on the sofa, surrounded by his family.

These days, Ifeoluwapo Isijola, waits for a hospital that would accept him for the clinical trial treatment of his Grade three glioma brain cancer. He is thirteen years old.
On the Christmas Eve of December 2006, Ifeoluwapo was being groomed for the great season’s celebration with his family. His parents brought in the family barber to make him look good with a nice haircut. Earlier in the year and at different times, he had complained of headaches and uncomfortable pains in the head that kept him awake during the day and all night. But on that December evening, the barber applied some pressure to Ifeoluwapo’s head while cutting his hair and he went into sudden seizure.

The family rushed him to the hospital and after staying overnight there, he was diagnosed with a neck spasm. But the discomfort of headache did not leave him. Within weeks, Ifeoluwapo and his parents, Chris and Helen Isijola, made several visits to hospitals in search of answers to his persistent headache. Several visits later, an MRI was ordered and it showed a tumour in his brain.
The discovery changed the life of the 13-year-old boy and his family. He was admitted at the Duke University Hospital Cancer Centre, where aggressive treatment commenced. The doctors recommended immediate brain surgery to remove a part of the tumour to relieve pressure in the brain. The surgery was followed by a year of radiation treatment and chemotherapy. The aggressive measures suppressed the growth of Ifeoluwapo’s tumour for the next few years, putting his cancer in remission between 2011 and February 2014.

But mid February, the tumour became active and Ifeoluwapo once again began a long frustrating journey to Duke University for weekly chemo treatment and other medical therapies. He went through days of high-dose chemo and continually checked back into the hospital to repeat the entire process. His parents would drive him every week for forty five minutes, from their Raleigh residence to receive treatment at the cancer centre in Durham.

The struggle takes its toll on Ifeoluwapo’s parents, but they remain resilient in spite of the trials. His mother, Helen, summed up the courage to fight on, thus: “He (Ifeoluwapo) did not ask for this. We did not ask for it too. We are here but running from it or being afraid of this is not an option.”
As Helen sat next to his ailing son, one could easily notice the palpable sadness and tears of a mother’s weeping heart, discomforted by the rigours and pains of her second son’s battle to stay alive from the ravages of brain cancer.

She felt torture and heartbreak only a mother could feel, watching a son helplessly slipping away, in pains. She pulled closer to her Ifeoluwapo and cushioned him up with a pillow. Hope of a better day and faith for healing were the remedies left in her aching heart as she remembered the day Ifeoluwapo blessed her world as her second son.

She said, “Jebose, my son is a very smart boy. His birth was the only planned pregnancy (I’ve had). I wanted to celebrate his dad by having a baby for him on his birthday, I planned (it to happen on the) same date, but it happened same in the month of June. I wanted to give my husband that gift of celebrating his birthday on the same day and month with his second son. He was the only child I asked from God to celebrate my husband, hence I named him Samuel (second name).

“Since he came into our world, he has been a blessed child with a strong will. He stands out among his peers; he’s a very respectful and compassionate child. His teachers always wanted me to come and hold a seminar in his school on how to raise a respectful and well behaved child, all because of his attitude, attributes and the outstanding qualities he exhibited always. Ifeoluwapo is very caring. When he was strong, if you were ill, he would take care of you and nurse you back to health. In July, I fell ill and he told me with his little strength ‘mama, I will never leave you’. He never did.”

Helen is not afraid of the outcome of this second journey with her son: she remains steadfast in prayers and faith, believing that whatever happens to Ifeoluwapo would be the will of God.
She continued, “We are not afraid of losing him because God is our strength. He has the final answer to where He leads this child. I won’t give up hope. Doctors say they don’t have any other treatment for him, that he has used all the clinical trials available to him at Duke Hospital. We are exploring other clinical trial options outside the state. This afternoon, a hospital in Ohio called and said it has a spot for him. We would head to Ohio in the next few weeks to begin this trial.”

In May, Duke Hospital told the family that their son’s cancer had retrogressed beyond hope and that the situation was hopeless. The doctors at the hospital recommended that Ifeoluwapo be moved to a hospice that would manage his care for the remainder of his time on earth.
The family was devastated by the news that one of the best known cancer research institutes in the world was closing its doors on their son, recommending a hospice home for a 13-year- old brain cancer child.

His dad, Chris, however, refused to accept the recommendation.
“We refused to give up on our son’s life and chances. Duke Hospital would not treat him for three months. Duke doctors told us to go home and get him ready for burial by placing him in a hospice. We decided to seek second opinion at John Hopkins University Medical Centre,” he said.
“Jebose, it was the wisest decision. John Hopkins reexamined his conditions and especially the tumour. The doctors discovered that there were medicines that could reduce the spread and growth of the tumour. The doctors urged us to return to Duke and demanded that they used a most recent medicine to treat our son. I learnt from this experience that doctors, because of the type of insurance you are privileged to have, could determine life and death.

“Doctors can choose who lives and who dies. It’s a shame. My son had Medicaid, but when we opted to pay for the medicines from our pockets, the meds that John Hopkins suggested to be used and our decision became a game changer. Medicaid patients have less life span and access to best medical treatments than those with mainstream health insurance.”

Unfortunately, however, treatment was not without significant financial effects on the Isijolas. Chris was a former Naval officer in the Nigerian Navy before he moved to England. Few years after living in London, he relocated to the United States. His wife joined him in New York. New York was fast paced and vexed, not the lifestyle Chris craved in United States. He moved his family down south where the couple invested in healthcare business. Helen’s School of Nursing became one of the accredited schools in North Carolina healthcare system, churning out CNAs and other professionals in the healthcare system.

Chris expanded as an investor in healthcare management and assisted living provision. But the sickness and challenges of their son’s brain tumour have affected their businesses lately.
He said, “Jebose, we wanted the best for him. It was either we chose him or our business. My wife closed a flourishing school and I had to sell two of my group homes just to be able to provide the best treatment for my son when Medicaid failed him. At this moment, we are barely surviving. I do not wish this on any family. It’s a very hard road in life to watch your son go through everyday pain at a tender age of 13 and not be able to help by at least, giving him a dignifying treatment.

“We need help. We have emptied everything we’ve got. I wish you could see our struggles to keep Ifeoluwapo alive by shrinking the brain tumour. It’s no longer our fights alone. Hence, we are asking for any financial assistance to help us through these challenging and tough seasons of our lives with our ailing son.”
Source:Punch

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